Impact of Chronic Illness on Families
All families with or without the experience of a child with chronic illness have routine difficulties they encounter: finances, sibling relationships, child-care, parenting and marital stress, the handling of developmental milestones in their children - all while trying to maintain a normal social life. When a child has a chronic illness, all of the normal tasks of parents and families are more difficult to carry out smoothly. We would expect that adjustments to the illness are needed and should be expected. We at the National Jewish Medical and Research Center attempt to assist parents and children with optimally managing the illness while causing the least disruption possible. In this short segment we will discuss some of the ways we frequently see chronic illness impacting families. At the end of this segment some recommendations will be made that have helped families effectively handle their child’s chronic illness and its understandable emotional impact.
Increased time devoted to help child cope
Generally, when a child is chronically ill, one or both parents must increase the attention and time devoted to helping that child cope effectively with his or her illness. These tasks include making sure children take medications promptly and with proper technique; for school-age children, insuring at the same time, that they maintain their studies as best they can; while for younger children, fostering stimulating activities and interactions with other children despite their illness. Frequently, parents faced with a chronically ill child feel increased confusion as to whether they should continue to discipline the child as they would their other children, or as they do when the illness is under control. Often, the time the parents devote to the chronically ill child takes them away from their other, healthier children. This can contribute to sibling conflict, attention-seeking behaviors of the healthy children, or to disagreement between the parents in their approaches to parenting.
Financial costs and interruption of normal family life
The cost of medications, of emergency room visits, of hospitalizations, and of routine doctor visits can often be enormous. Increased tension between parents and healthcare providers can occur. Dealing with insurance companies regarding coverage benefits is usually extremely stressful for the parents. Planning for family outings, children’s overnights, or the ability for parents to go out alone without their children is often disrupted. Often babysitters or day care cannot be accessed easily, either because the parents are concerned with untrained caretakers taking responsibility for the ill child, or the caretakers themselves are uneasy with routine medication giving or the potential for emergency situations. These interruptions to normal family life understandably contribute to increased frustration, and even to conflict that further intensifies an already pressured atmosphere.
Feelings of guilt
Often, chronically ill children or their parents feel guilty at the existence of this chronic illness. Ill children often feel responsible for the increased financial burden to the family or for the disruption in their planned activities. This further stress may contribute to the child’s intentional poor self care of the illness, such as not taking medications as prescribed, denying symptoms, or not seeking proper medical attention promptly. These “well meaning” behaviors by the child, unfortunately, further stress the families, often making the medical status and the financial burden worse in the end.
For chronically ill children, these increased stressors can make their physical symptoms worse and in some instances actually trigger them. Despair and hopelessness in families and children may also develop as a result of chronic illness. Examples of these unhappy contributors to the children’s various emotional reactions are: severe steroid side effects, not being allowed to have pets, missing peer activities and recess, extended school absences, or a limited diet.
Remedies to reduce impact on the family
At National Jewish, we believe that there are several helpful remedies for reducing the impact of chronic illness on families. The first is education : 1) learning what to expect from the illness and how best to control it; 2) knowledge of medications and their side effects; and 3) learning appropriate preventative methods for keeping the illness routinely controlled, such as allergens to avoid. Education regarding how to intervene when a child’s illness reaches emergency proportions is another helpful tool we offer families and their community caregivers to reduce fear and anxiety in family members and to increase their sense of control.
Routine counseling, family and multifamily psychotherapy are other methods for reducing family stress by helping them devise solutions for maintaining normal activities while controlling the illness. Counseling provides chronically ill children, their siblings, and the parents an arena in which to express pent up feelings and secret fears, and facilitates working through their stages of grief. This is particularly helpful when there are fears, such as fear of death, fear of divorce, or fear of financial disaster. Often parents feel it is not okay to discuss their stress and concerns with the child. In fact, when done properly, this may provide relief for the entire family. Fostering this type of honest and direct communication is a prime goal of counseling. It often helps chronically ill children realize their family understands how they feel and are there to help them. Families also experience counseling as helping them realize that they are not the only ones feeling these pressures. Active involvement by the entire family in a course of brief counseling can become a predictable, reliable activity that the child can come to rely on to air important feelings.
A psychosocial evaluation is therefore typically a component of a child’s medical evaluation when seen at National Jewish. We view a family’s preventative, proactive use of such professional therapeutic assistance as a sign of strength in families, rather than as a sign of weakness.
This information has been approved by Michael Miller, M.Ed.S., LCSW (May 2005).
